Wednesday, April 18, 2012
So itís been 9 months, and I finally gave ďbirthĒ via c-incision (chest) to a .5 ounce pointy headed ďbabyĒ with itís umbilical (catheter) still attached. Itís name is PORTia. We chose this name because every time we see it, it will remind us that the money we would have had to spend (if we didnít have insurance) would have bought us a Porsche, a Ferrari and probably more. But no matter what the cost, the final results is priceless!
YES!!! My most recent PET scan showed zero uptake which says I am free of cancer!!!
While these 9 months have been hard, emotional and scary and I never hope to repeat them, they have taught me something very important things I wouldnít trade...
I have an amazing family and awesome friends.
I am stronger than I ever thought, more so than my original belief of this after my first marathon.
I can handle the pain without the drugs, but will use them when I feel it is necessary - they donít show weakness.
I wonít sweat the little stuff and most problems are little. If I canít fix them they will many times fix themselves.
Exercise is my friend. It got me though the cancer treatment by helping both physically and mentally, and is now helping me get back my energy.
IĒm going to have to learn to work with my chemo induced joint pain because the alternative isnít acceptable.
Iím not going to complain about how expensive insurance is, not having it would have cost more.
The past is in the past, let it lie, let it die.
Now is what counts.
The future will come no matter what, so work to make it a good one.
I always wondered what I would look like with no hair... now I know.
It is health and not weight that matters.
Listen to your body.
Make the doctor listen to you or get a different doctor.
Donít fear the diagnosis, face it head on, and work to fix it, if at all possible.
Celebrate! There is always something worth celebrating.
While I wouldnít want to go through the last 9 months again, I wouldnít want to give back what I learned during my cancer journey.
I didnít just give ďbirthĒ to my port today, I gave birth to a new life.
For those who are curious, I will be checked every 3 months with an exam and a CT scan every 6 months for the next 2 years, but the probability of the cancer returning is extremely small.
Monday, January 16, 2012
Some may have noticed that Iíve been somewhat absent from SP, for a while. While I kept up with the two teams Iím leader on, I only posted elsewhere occasionally.
Well, since November life has been a bit more challenging. While doing a half marathon on November 5, I ended up with major blisters on both feet. This took me out of walking totally for a long time. I missed my next and final half of the year, and all the 5Ks I would normally do here at home during November and December, because the chemo I was on prevented the blisters from healing in their usual quick manner.
On top of the blisters I caught the Colorado Crud... a viral upper respiratory infection that I have only recently gotten over, with the exception of a lingering cough. Something else that kept me away from walking.
I had my final chemo infusion at the end of November. This was my hardest cycle yet, what with the crud and blisters added to the worst side effects I had throughout the entire lymphoma treatment. This cycle brought on a UTI and the shingles along with more nausea and GERD than in the past cycles.
Late December I had my post chemo PET\CT scan. I went to my next doctor appointment believing that everything was done... the lymphoma would be in total remission and I would be getting out my port before the start of the new year. But the universe decided to play another cruel trick on me. There was a new area of uptake (glowy bits) in the lymph nodes under my left arm. There was immediate talk of biopsy. Then the fact that I was currently fighting shingles and they were on my left bicep came up. Could this be the cause? While it was decided that the shingles could very well be the cause, my oncologist decided that I needed to get a mammogram just to be certain because it could be from BREAST CANCER. Ok, my brain goes numb at this point. Iím told they donít expect to find anything, itís just a precaution. So I go home and schedule my mammo and an ultrasound of the lymph nodes in my left armpit.
Tuesday the 27th comes and I head in for the tests. The ultrasound of my armpit showed nothing of concern in the lymph nodes. The mammo on the other hand did. Time to schedule a core biopsy. They donít expect to find anything, itís just a precaution.
So I go home and leave a message with the hospital radiology unit about scheduling it. Then I get a call from the radiologist who read my mammo films and he wants me to come back for additional films of another area. So I end up back at the imaging center the next day for more films (a total of 12 on the left, yes ladies you can groan now) and another ultrasound of the breast. The radiologist decides that new area is ok, and I just need to biopsy the original area of concern.
So, the biopsy is set up for January 3. I get the results on Friday the 6th. They see more items of concern, something that could be nothing or it could be the beginning of cancer. I need to schedule a surgical excisional biopsy (aka lumpectomy). They donít expect to find anything, itís just a precaution.
I meet with the surgeon on the 9th and surgery is set for the 11th.
While everyone is telling me that I have to believe everything is going to be alright, I canít do this. Iíve been told constantly that they donít expect to find anything, itís just a precaution, too many times.
The day after the surgery, I go to see my oncologist for a scheduled appointment. During the last one all the focus was on the new area of uptake and getting the mammo and ultrasound. No mention of the original lymphoma.
The first thing he asks is when I plan on having the excision? I tell him, ďYesterday. Yes, I had the surgery the day before. I add that I had hoped my next visit to the surgeon would have been to have the port removed.Ē He tells me he wonít have the results until Monday. This I already know. Finally, he addresses the lymphoma. I am in total remission and we are done with it. Finally some GOOD news and I think yea I can get the port out soon. Then the ďbutĒ comes. But he wonít have my port removed until after my next PET/CT in April. He wants to know that the new area of uptake is gone. I understand the reasoning, but to me that says we are not done, yet. This also now puts the proverbial final nail in coffin of my hoped for trip to Europe in April - I had already come to believe that it probably wouldnít happen, especially if the biopsy isnít in my favor.
Today is Monday, January 16, and I called my oncologist at 7:30 a.m. to get the results of my biopsy, as instructed. He hasnít seen it, but looks it up online. It has come back clean, no cause for concern. He tells me to go celebrate. I canít yet.
Yes, Iím relieved, but still feel that things wonít be DONE until my PET/CT comes back clear and I get the port removed. Only then can I celebrate.
So, Iíve gotten good news, but Iím still waiting.
Thursday, September 08, 2011
On the 14th day (a Monday) of my first chemo cycle, my hair got itís evacuation notice. It like most in evacuation areas started with small numbers leaving - 5 or 6 hairs at a time. At this rate I figured it would take a long time for it to all be gone.
Day 15 was somewhat different. More of my hair started taking the evacuation notice more seriously. Those 5 or 6 hairs turned into a whole lot more. Not handfuls yet. And I wasnít rolling over at night into a small hamster on my pillow, but it was definitely making a more concerted effort at leaving.
Day 16, I brush my hair before heading out for my walk, and it is coming out in handfuls. After my walk I figure I need to prepare a little differently for my shower. I donít want to block the drain with a drowned hamster worth of hair, so I grab some paper towels to dry my hair after I wash it. While I scrub it with gently with the shampoo, I do not touch it during the rinse and just let the water wash over it. So far so good, the drain is still working.
After my shower I use the paper towels to soak up the water. I grab my wide tooth comb as suggested in my ďhow not to lose your hair so quicklyĒ information and gently comb working from the bottom up. Well, I donít know that the wide tooth comb saved any of my hair that was under full evacuation, but it did collect a whole lot of it.
Those with longer hair know that after combing it we usually gently run our hands down and remove any lose hairs left that the comb didnít remove. So I do this and end up with another handful.
In one shower I have gone from having a full head of hair to being very thin, especially on top.
So with this I decide that itís time to call in for my ďtime to shave it offĒ appointment with my stylist. We schedule the appointment for the next day. I spend the rest of the day cutting scarves from some of my fabric that I have lying around the house.
I head to bed wearing a scarf, but itís too hot so I take it off. Thankfully, I still avoid the hamster on the pillow issue. At least what hair I have is holding on at night.
Itís now Thursday, 3 p.m. I wait for my stylist to arrive as she is coming from school. She arrives with a beautiful bouquet of flowers for me. Her first question after finding out how I am is, ďAre you ready for this?Ē My response is, ďThat Iíd rather shave it off than look like a 90 year old, half bald person. Letís do this!Ē
My husband has come with me and I have him take pictures.
We start with taking a couple of clippings so I can compare my old hair with my new hair when it come back in.
Out comes the razor. She starts on the top. Now if this doesnít feel weird.
First we try the comb over. It may work, but only for a short while.
At one point we try out the ďmonkĒ look. No, this oneís not for me.
When the shaving was all done, we headed over to the sink for a quick rinse. As we passed by, several ladies having their nails done were staring and so my husband quipped, ďShe lost the bet.Ē This left them rather embarrassed but with smiles.
It was great to have this done with my husband supporting me and a stylist who made it fun.
That night, it felt like I was sleeping on velcro as what hair fuzz I had left got ďstuckĒ in the pillow case. So the next day I took my shaver to my head to remove as much of my velcro as possible.
I have the answer to my question, ďDoes your part tan?Ē I now have a racing stripe down my head from that tan part.
Iím finally getting used to the stranger who looks back at me from the mirror. As are my family and friends.
Many have asked me if Iím upset with losing my hair. I have to respond that losing hair is a small price to pay to reach a new healthy life. My hair will return, but I have no intention of letting the cancer do the same.
Tuesday, August 23, 2011
On August 20, I participated in the Warrior Dash race in Copper Mountain, Colorado. For those who donít know what this is, it is actually only a 5K race. What makes it a challenge are the obstacles each participant must face as they go through the race course. I was honored to be able to not only do it, but to do it with my 18 year old son, Jeremy and good friend Karen.
When I signed up for this race late last year, I was excited, but somewhat nervous having never done anything even close to this type of event. I planned on getting in shape for the race by doing boot camp a couple times per week along with my usual training for half marathons. Then in January, 2011 I fell and injured both hands, wrists, arms and shoulders. I could still walk, but boot camp and all forms of weight training were now off the table. Even facing this setback I still planned on doing the race. Slowly my arms et al showed signs of healing, but would they be good enough? Iíd do the race no matter what.
Then in late April, I started experiencing pain in my right side. Along with this was just a general malaise. After doing a half marathon the pain faded and I felt better. At the end of May came a 10K and along with the days leading up to it came pain in my left side. But, knowing I can handle race pain and with my son by my side, I decided to do the race. Part way through the race, the pain faded and I was able to finish. However, the next day the pain was back in spades. Time for a trip to the doctor, something I donít do lightly.
After an exam and x-ray, nothing was found. Must be ďgas,Ē go home and take some gas prevention medicine was what I was told. Surprisingly and coincidently the pain went away. I suddenly felt better than I had for months.
Then another half marathon came along on the last Saturday of June. This time the pain was back on the right side. My son reminded me, the pain seems to go away with the race. So I did the race, and sure enough by mile 4, no more pain. I finished in much better shape than I had the previous year. Sunday, I was tired and a bit sore, but good. Then Monday came and so did pain so severe that I couldnít focus and could barely think. I had to go back to the doctor only this time I wanted a diagnosis no matter what it was.
After telling their best diagnostician my story and telling him I could ďtryĒ to get through the night, he sent me directly to the hospital for a stat CT scan. I was to wait at the hospital until the doctor called. When the phone rang I heard the words that would make anyoneís heart sink. You have enlarged lymph nodes, the radiologist says it looks like Lymphoma, it appears you have cancer. The evening brought tears and fears, but the next day brought out my race persona and the peace of mind that I could not only beat this, but would beat this.
After finally meeting with my oncologist, having 4 surgical procedures in 3 weeks and a myriad of other tests it was time to schedule my first chemo infusion.
Now a new concern, would chemo stop me from doing the Warrior Dash? Not if I could keep it from doing so. So chemo happened on Tuesday, August 16, our Dash wave was at 11:30 a.m. on the 20th.
I met the challenge of the Dash with my son and friend Karen. It took us 1:40, but it was the most amazing 1:40 I have had in a long time. Karen and Jeremy were with me through the whole race. I had race officials who I told that this battle was more than just a race because of my newly diagnosed cancer cheering me on. I had an OMG-orgeous young man help me through an obstacle and I did a race that some thought is crazy in the best of health.
As I look back on the Warrior Dash, I realize it is an analogy for the other battle I have to face - Lymphoma.
I signed up and made the commitment - I have to see it through.
I went into it with those I love and trust.
There will be obstacles that try to defeat me and the ones in the Warrior Dash relate directly to my cancer battle.
Obstacle 1 - Rope climb up a short steep hill - This was having to get out of the initial pit I was thrown into when I heard the preliminary diagnosis. I had to grab the rope and pull myself out.
Obstacle 2 - Hanging Tires - These were all the things that kept slowing me down to get to the final diagnosis. These also represent the surgical procedures and tests I had to go through. But because we were the last ones through and we did it purposefully it was easy to make our way through the swinging tires without getting banged up or waylaid.
Obstacle 3 - Walls and Rails - We had to climb over the waist plus high walls then go under the rails topped with barbed wire (5 each). This is where I told the officials about my ďotherĒ battle. They started cheering me on, my son & friend did the same. Here, sometimes you can climb over, but sometimes you are prevented from this by an additional obstacle, so you have to find another way through. Having someone cheer you on be it friend or stranger will help you. Still healing from surgery, having chemo right before the race with the possibility of major side effects was like going over and under this obstacle.
Now a long walk with a slippery slope to get to the next obstacle - What I will be doing with every cycle of chemo. But I still had support, from both strangers and loved ones.
Obstacle 4 - Mud Pit - Fresh dirt was just added and it did itís best to suck off my shoe, but I stopped, refocused, got my shoe on and enjoyed being cheered through the muck, as my son floated on his back through the pit beside me. Yes, Iíll be getting dirty, side effects will try to suck me down, but if I enjoy the company of others around me, and reach out for help if needed, Iíll get out of the mud so I can keep going.
Obstacle 5 - Bungee Web - This was a large number of bungees stretched across the trail like a very confused spider web. It was on an off-camber slope, that was covered with the mud that fell off of participants. Part way through I got stuck. I didnít know which way to go to get past all the cords. I couldnít get my footing. Then a stranger offered his hand and his guidance, and he helped me break free, then he was gone. I realize that there will be times I need to take the hand of someone, maybe even a total stranger to get me through. Itís not being weak, itís being smart.
Now it was time to pause at the water station. I take what I can get, wash the mud off my water bottle and we are off again. Take what is offered with an open hand and heart, and clean off a bit of the mud to keep yourself hydrated and healthy.
Obstacle 6 - Dark Tube Crawl - It was a culvert filled with rocks and draped in black fabric. This one I didnít do. I wanted to stay on my feet and not let my legs get scraped and cut on the rocks inside. Even though I know there was light at the end of the tunnel I also know I have to stay on my feet as much as possible.
Obstacle 7 - Plank Walk - Planks were from 4 to 8 inches wide. It was up 45 degrees, down, across, up and then back down 45 degrees with a height of about 10-12 feet. I started with holding on to the plank as I ďwalkedĒ up it, but when I got to the transition point I realized I had to stand up straight, focus, look ahead, stay balanced and accept a hand if necessary. Everything I know I will have to do through my cancer battle.
Obstacle 8 - Hellís Hill - Up and across a ski slope with lots of gullies and rocks. My son stayed with me and stopped when I needed, which was at each gully. He pointed out beautiful wildflowers when I needed something else to focus on other than fatigue. The hill will be the cumulation of the next 18 weeks, and even though I am staying focused, I am going to need to have distractions along the way to let my mind and body rest.
Obstacle 9 - Horizontal Cargo Net Crawl - 30 plus feet of cargo net lying 10 feet about the ground and with every move of participants the center of gravity and net tension is changed. I know that every chemo infusion will possibly bring different side effects, but I will have to just keep going, not allowing myself to fall through the holes; and crossing backward is allowed because sometimes going forward backward just allows your to stay stable, because youíve see where you have already been.
Obstacle 10 - A-frame Drop - Climb 20 feet up wide spaced rungs, climb down 3 feet and then hang and slide 10 feet down the other side to the ground.
Obstacle 11 - A-frame Cargo Net Climb - Climb up and down a 30 foot tall a-frame structure on cargo nets.
Obstacle 12 - A-frame Wall Climb - Using a knotted rope climb up a 30 foot tall a-frame wall then climb down the rungs on the back side.
Obstacles 10-12, I opted out of doing during the race, not because I felt I couldnít do them, but because I felt at this point I shouldnít do them out of safety for myself. When battling cancer, even though Iíd like to do everything I may normally do, I understand that some of those things are better left for another day when I am physically strong enough to not cause harm. So those 3 obstacles are the ones I will be aiming for next year. I will be stronger and healthy and those obstacles represent the life that will be coming after treatment.
Obstacle 13 - Fire Jump - This was 2 sections of fire 2 feet or so deep completely across the course with flames 2 to 3 feet high. My son and I actually ďjoggedĒ toward it because I knew it would take a bit more momentum than a walk to safely traverse the fire. Yes, over the last few weeks and next several months, even though walking is my way, I have had and will have to occasionally run to get the momentum going and keep it going as I fight for my life.
Finally, the finish line came, and we all know what that means. It's time to celebrate and continue to live life to it's fullest no matter what obstacles are thrown in my path.
So, thank you Warrior Dash for teaching me what I need to know to fight cancer and how to live my life as I do so.
Tuesday, August 23, 2011
What would you do it you heard the ďCĒ word?
Of course that ďCĒ word is cancer.
Would you cry?
Go into denial?
Beg God to fix you?
Question, ďWhy me?Ē
Allow fear to take over?
It would be easy to do any or all of these things, but for me...
I actually heard the "C" word or in my case the ďLĒ word or Lymphoma over the phone from my doctor. Iím actually grateful that he told me with no messing around, but needless to say I was initially in shock. I handed off the phone to my husband so he could hear the same words. Now, I was to go home, try to sleep through the night, which I actually did and then Iíd be on the phone with my oncologist the next day; my oncologist... hmmm two words I never thought I would be saying. I went home with tears and fears and told my two sons.
My office visit with the oncologist wouldnít come for 8 days, plenty of time to consider what was happening to me and research that word. But it could also be 8 days that could paralyze me.
Itís kind of funny, the next day I had to get out for a walk to clear my head. During the walk I ran into a lady whose dog I like to pet and I told her. She turned out to be an 11 year cancer survivor. She had the calm demeanor that I needed. I returned home with total peace about my situation. I was going to fight this and win, so it was time to get things moving.
I had a core biopsy, laparoscopic biopsy, bone marrow biopsy, and port surgery plus lab work, a CT scan, a PET scan, an ECG and started chemo in just over a month.
It turns out that the initial tears and fears have been my only negative emotions to go with this diagnosis. I told my son that I wanted my pain diagnosed, no matter what it was. I got that. I told my oncologist I wanted to know exactly what I had and how to treat it. I got that. I then told my oncologist that I want to kill it. Iím in that process right now.
You may think Iím in denial, youíd be wrong. I know exactly what I am facing. However, I believe that any negative thoughts from me or others around me will only do me harm. Will I have bad days? Iím sure I will, but staying active by walking daily, continuing to do my races (yes Iíve been give permission to do so), and looking only toward the positive are the things along with the medical side that will KILL this cancer and not allow it to return. So donít feel sorry for me, have no pity. If you think of me only think positively and you will be helping me heal.
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